Three generations interacting together

Which Comes First, Medical Needs or Family Routines? A Table Talk Wednesday Recap

Written by Julie Higginbotham, Senior Case Coordinator, Mecklenburg County CDSA

The weather is certainly cooling down here in Charlotte, but that didn’t stop us from having a great discussion last month here at our Table Talk Wednesday event!  We decided to spend some time focusing on supports and services for families when children have more involved medical needs.  Shawna Cary-Coleman, Physical Therapist and Owner of Carolina Kids Therapy Services, came to help facilitate with Linda Molina, Sr. Case Coordinator at the CDSA.  This one was interesting because we talked a lot about some concepts that we always address, such as relationship-building and addressing natural routines and the IFSP as a whole.  We even touched on Just What the Doctor Ordered and how that might not match up to early intervention philosophy.  Let’s jump right in with the other big themes…..

  • We might not be able to tease apart medical needs and natural routines. Yeah, that happened right off the bat, and for good reason! One person mentioned the fact that, for some children, their medical needs must be addressed regularly throughout the day, and that is part of their routine. Then there’s the impact of medical needs on a child’s overall development and functionality within daily routines to consider. Families are also going to regular medical appointments for ongoing support, so those visits may also be part of a natural routine for that particular family. That doesn’t even scratch the surface, and that’s OK. Families are dynamic, whether there are medical needs requiring additional attention or not, and we don’t have to draw a line in the sand in order to be supportive. Furthermore…..
  • We’re there to address families’ priorities and concerns. Yep – no change there! What can be different, though, is what those priorities and concerns are, moment to moment. One person talked about what it’s like to go into a visit, ready to talk about the joint plan from last week, but the family is ready to talk about all of the medical updates since last week instead. Now what? Well, keep in mind that anything going on with the child or family can have an impact on both development and routines, and having a formal joint plan doesn’t mean that it won’t change depending on what’s happening in your next visit. Balancing that information-gathering moment with follow-up questions about how that information affects other aspects of the family’s life shows the family that you heard them. It may also help the family think through next steps, particularly how the information may affect routines in outcomes on the IFSP that you’re there to address. Understand that it’s OK to be in the moment with families, too – as Shawna said, we get more than the information from families, we get the emotions, too, and we need to acknowledge them.
  • We need to remember to address other routines, too. While a primary focus may be on supporting the balance of routines impacted by medical needs, we need to make sure that we talk about other things happening during the day, particularly ones that involve engaging with other family members. Perhaps a child spends most of her time in her room because she’s using a lot of medical equipment – how can we ask questions to see if the family wants that to look another way? Maybe a child has a feeding tube, and the family would like to work on feeding him during meals with his siblings? This is a great place to talk about whether assistive technology, both formal and informal, might make a difference. There’s something to be said about helping a family look forward to something, particularly when their world may seem full of needs to address – IFSP development and ongoing reviews make for great opportunities to help the whole team look at these potential routines all at the same time so everyone can share their ideas, especially the family!
  • Sometimes, families just don’t want to answer questions anymore. This was an interesting concept, recognizing that parents of children with more involved medical needs get questioned by a lot of people, a lot of the time. One attendee said that she feels like she needs to share more information with families on the front end because she wants to be helpful and take some of that pressure away from the parents. How reflective was that? 🙂 Speaking of reflection….how do we then strike a balance between asking reflective questions and sharing information, and when do we do it? We still need to be gathering information about what families have already tried and what they want to see happening in their routines. The next step that sets us apart from many other systems is that we then get to try stuff together, in the moment, before making more of those concrete plans with families. Coaching is about so much more than just asking question after question – that collaboration with families ties the function to the questions.

So, how do we all do this together as IFSP teams?  For starters, we have to be really intentional about how we’re communicating with each other.  We don’t want families to have to tell their stories over and over if we can help it, but we also need to be transparent with families so they understand that we’re collaborating, not gossiping, to keep everyone on the same page.  There also may be more cooks in the kitchen when families receive supports from nurses or other outside agencies, and we want to keep us all on the same page so we’re all working on the same recipe.  🙂  Another takeaway moment for me was when someone suggested that we need to make sure we’re doing more than just saying that parents are the experts on their child in our world.  We need to make sure we show it.

Stay tuned…we have another recap coming soon to share our conversation about EI for the Holidays!  Start thinking about how you might address potential routine changes with families over the next several weeks…we talked about more than just changing the date of your visit!

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